When you were DX | Arthritis Information

Thanks all,

 

Tink

 

Have you listed your meds at another post? Or are you not on any right now?

 

Hope you get to feel OK soon. I have started Plaquinel, Hydrocodone , I have a prescription for celebrex ( my family Doc gave it to me). I was started out on a mild nsaid...can't remember the name I was only 9.  Then added a little prednisone.  This was done by my pediatrician.  After seeing a pediatric rheumatologist I was weaned off the pred and started on methotrexate which kicked my JRA's ugly butt for a long time.  (12 year remission)  Naproxen, prednisone, Indocin, Lasix, MTX, drop Naproxen, Indocin, Lasix- increase MTX and Prednisone- RELIEF! Time it took-2 1/2 months Had a severe onset of RA and was started on antibiotic therapy.  After 6 months was taken off antibiotic ther. and started MXT with no change.  Finally got better without drugs and went 5 years without much of a problem and then the flare from hell hit.  Blasted through dmards and biologics and Dr. wanted to start Orencia last year but we went backwards and I restarted Humira with an increase in MXT and added Sulfasalazine.  Am now in clinical remission for the last 12 months.  Lindy

sTink -

Minocin, tramodol, salsalate, and folic acid at onset.  Dropped to 1/4 of it's original dose of tramadol now and switched to Naproxen because of a reaction to thyroid meds they tried.  No longer on thyroid meds.  Dumped PPI and some other things but had to add in Zithromax.  On a bunch of supps that mostly I researched and thought beneficial.  LOVE Melatonin. 

Pip!2009-01-19 23:59:46Asprin...high dose asprin, then plaquinil, and later low dose mtx.  Then through the years a host of othersRheumatologist:  Methotrexate, folic acid, quinine (for leg cramps), then added in Plaquinel, and finally Boniva (now Folosmax as the Boniva is a very bad drug for me) when the probably predisone induced osteoporosis was discovered by my primary.  I finally asked my primary for pain control and have ultram, vicodin, and klonipin on PRN basis (she was a little shocked to find out I wasn't on any pain medication).  Valtrex PRN after she cultured my mouth for the horrible mouth ulcers which I had been bitterly complaining about for decades turned out to be mouth herpes, then two sets of eye drops and stopped the Plaquinel as I now have a probably predisone-induced cataract, eye ulcers, abrasions.  Then nail varnish from the toe fungus from being on the MTX.  Obviously, alot has changed with time.  Hi sTink, saw a Consultant physician as it was a Saturday and no-one else was around, went to see a friend who knew me through working with DRs and he started me on MTX 20mg, Plaquenil 20mg? (from memory), sulfasalyzine 400mg, and prednisone 50mg, Celebrex 400mg.

The relief was amazing but it didn't last long, all sorts of allergies/intolerances over ten years, Now on Mtx, pred (yes, still), and pain killers, hoping to start Rituxan soon.  Best of luck to you, my advice to you is to keep a record of everything as over the years we tend to forget things and the Drs are always asking things from way back!!!!! Regards Janie. I'm interested in this topic and thought I'd jump in. I've been lurking for a week, trying to learn about RA while searching for a diagnosis. Just to introduce myself - I'm a 39-yr old female living with my husband and 3-yr old son in Colorado, where I love all that the outdoors have to offer. The day after Christmas, I began a sudden arthritic flare that affected 10 joints within 2 weeks. I managed an appt with a rheumatologist at 3 weeks from onset (which I understand to be a feat in itself). She thought my symptoms presented more as a viral than rheumatoid arthritis due to the very rapid onset, but yesterday the dr's office called after receiving my most recent labs to say they now believe it is RA. Since I am negative for RF and anti-CCP, I believe they will do an MRI next for diagnostic purposes. I'm hoping this forum will be a great place for learning and support, and that I can offer the same. Hi ColoMo, welcome and good luck with your diagnosis, it would be amazing if it is temporary, but if you need help, info, a shoulder to cry on, even entertainment sometimes, come and visit, we are all experienced and some of us are experts by now!!!!!  It will be a long and winding road but if you keep things in perspective, make sure you have good support, ie. friends and family, you should cope fine.  best of luck, Janie.Edited by me for colour.MTX, prednisone (I am weaning off that now), folic acid, celebrex. Dropped celebrex and now on nabumetone. When I was first dx Rheumy put me on plaquinel, arthrotec, and tramadol.  PCP had me on fentanyl patches with percocet for breakthrough pain.  I had a major flare in September where Rheumy added prednisone (now tapering off of), and MTX.  Response was ok but not where she wanted me so we added Enbrel.  I had my choice of Enbrel, Humira, Remicade or Orencia.  I chose enbrel and with the current combination I seem to be doing ok.  I think the prednisone taper is adding pain and stiffness to my day.  Rheumy and my PCP work together on my pain meds and everyone is fine with what I'm taking.  Good luck, Hiking_galThe first thing was just aspirin..  as my dr said "aspirin to injury" meaning as much as I could handle til it became harmful or didnt work so when I was popping 6 at a time every  4-6 hours we switched to Indomethacin.  This begain in 1995 or so..

 

Later ..MUCH later.. 2003, we added plaquinel, which did absolutely nothing. Then I went off plaquinel and tried MTX. that also did nothing. Then I started Enbrel and MTX and that worked for 4 months.. Then MTX and Humira, again that worked about 4 months.. Then  on to Remicade and MTX... and there I've been for 3 years.

I was already on an NSAID (tried various ones, currently on Relafen/nambumetone), a muscle relaxant (Skelaxin/metaxalone), a nerve pain med (Lyrica), and pain meds (Vicodin/hydrocodone) for my fibromyalgia and neuropathy when I got the RA diagnosis.  My rheumy started me on Enbrel only.  After doing some research, I asked about adding mtx (with folic acid) and he did.  The Enbrel didn't work and the mtx raised my liver enzymes, so I was taken off both and went on Arava/leflunomide.  Had bad side effects and went on Imuran/azathiprine with some success.  Tried Rituxan/rituximab for one round and saw no difference.  Now on Orencia/abatacept (along with the Imuran) since April with some minimal improvement.  If Actemra/tocilizumab gets approved, I will switch over to that.After being diagnosed, did research at Road Back Foundation.  Started Antibiotic Protocol.  Still on it.

WOW..Thank you all for the responses. It will take me time to re-read and absorb all the answers. It seems that everyones drugs are similiar but the COMBO'S are all slightly diffrent. I am confused. I go to my Rheumy in Feb and I will ask him about adding other drugs, I am leaning towards methtrexate instead of Predisone only becaus I do not want weak bones. I don't know. I will see what he has to say. Maybe my meds will be woking by then.  I hope so, I am getting a little down. Not like me at all.

Tink

Has anyone ever taken Clinerol? I may be spelling it wrong. I was talking to my mom the other day and she says she remembers an episode where her hips ached so bad she couldn't climb the steps in our house and was put on it and it worked really well for her.  (I'm thinking she must have been about  56)Then she was switched to Motrin and says she took that until she had a series of heart attacks in 1989. She had achy joints but she also hurt all over because she had been paddled on 4 different ocassions over the course of a couple days. She really didn't feel good until she moved to FL a year later and says the climate has been the best thing for her. She has hip pain on and off but only if she over does things. She's 80 now. I never knew this story because I was out of the house when she was experiencing it and I really don't remember her ever mentioning it.

I am wondering if maybe she has RA and no one ever gave it a name.

I wonder the same thing for my mother WanttobeRAfree. My mother is full of Arthritis and has been since her late 30's. She is all twisted up in her hands and feet. She has had her knees replaced. Her hips are good, but her shoulder and cervical neck are really bad. I feel very sorry for my mother. She is in her 80's she lives with a lot of pain. She get fractures in her feet very easy. I completely understand her pain now. I feel bad about the times I did not understand.

 

Tink

Yes, Wanttobe, I took Clinoril (sulindac) for awhile.  It is another NSAID, like Relafen, Mobic, Voltaren, etc.  If find with the NSAID's that it takes a bit of trying to find the right one, and then it may work for a few years before something different or stronger is needed.Thanks for clearing that up Innerglow. I was wondering if it was a dmard.I was already on ibuprofen when I started having joint pain.  The Rheumy switched me to Celebrex and gave me Plaquenil and also burst-and-taper of prednisone when I needed it.  He also gave me Lortab to use as needed.  The Celebrex did nothing, so he switched it to Relafen.

 

The Plaquenil started working around the 3 month mark and I did quite well on it and the Relafen for a couple of years.  Then I started having problems, so Rheumy added Sulfasalazine.  I couldn't tolerate it, so he switched it to Methotrexate.  He slowly upped the dosage to 15 mg, but I seemed to be getting worse, not better.  So he added Enbrel.

 

The Enbrel worked so well that we dropped the Methotrexate entirely.  Currently, I'm on Enbrel, Plaquenil, and Relafen and doing well.

 

Started on relafen and mtx.  Added Enbrel after about 4-5 months.   Have been on that combo now for about 1 1/2 years and doing pretty well.  Decreased the mtx slightly, from 25mg to 17.5mg.   Next move is to drop the relafen.  Tried once, but with holiday stress and work load, not good timing.   Hope you find something that works, whatever that may be. 

Welcome aboard ColoMo.  Your post caught my eye because it was two days after christmas in 1985 when my JRA onset.  Weird coincidence. 

Wanttobe...Clinoril was the first nsaid I ever took for my JRA.  I couldn't remember the name but that jogged my foggy memory.  Since then I've been through nearly all of the nsaids.

Thanks for the welcome Janie and Bob.

 

I read some testimonials on fish oil and started that this week too, and it might be my miracle drug too.

It has worked for many here.  I tried it but couldn't seem to find a brand that didn't give me the "fishy" burps.  Yuck!Hi and welcome, Colomo!

First started on plaquenil...then added mtx...then gradually over the years everything else has been added.

Kweenb, Are treatment plan is very similiar.  I wanted to say thanks to everyone.Tonight I am miserable.I can hardly move my hands. Thumbs and wrist hurt so very badly. I wonder why I feel so much worse? Wanted everyone to know I appreciate this. Going to bed in a few minutes, wanted to say thanks so much.

 

Tink

((hugs)) sTinker. Sucks to be trying to sleep while in pain. Hope it gets better overnight.

Well, it's been 14 years now.  Wow time is flying by while I waited to get better to live.

But anyway, I was not diagnosed the first year of symptoms.  No insurance and sent home with a bottle of ibuprofen from the ER on Long Beach, Ca.  A year later in TN, my hometown, i was diagnosed. started on NSAIDs.  Higher and higher doses of relafen, naprosyn. then prednisone, then plaquenil.  then told I would be crippled in two years if I didn't take the MTX.  I opted for out on the MTX and started herbal treatments,special diets, authentic Chinese medicine, and AP therapy for close to a year.  Then on the Enbrel, prednisone and arava (best results, longest results) haven't been anywhere near that type of relief from pain since.  Next went on the MTX, kept stopping it because of side effect, started humira, starting kineret when humira stopped working,  Then went on Remicade and mtx again. got worse. then went on Enbrel again. continued to get worse. then placed on injectable mtx which I tolerated better but liver enzymes kept elevating so started on Orencia for a year and a half, and now Rituxan in October. Going for a second round next couple of weeks.

loads of medications for other things as well.

feel like a drug addict I must say.

I started on relafen and plaqenil. Took plaq for 8 months and it did nothing so then I was put on sulfasalzine and found out I was allergic. Then put on mtx and had a reaction to it. I tried humira for 8 months at first it helped some then nothing. I then was put on enbrel Dec 07 and it helped right off until I had to go off to have surgery on a cyst and it seems like it is not as effective. I was supposed to go to rd appt today but woke up throwing up at 4am. It seems I caught a virus my son had last week. I feel better tonight but today was uck.

I can't get back to see rd until Feb 2. OH, I also take flexeril (muscle relaxer), cymbalts for depression, vicodin for pain, and xanax to calm me down. I am a very hyper control freak and it has helped to calm me down. I usually take it at night when I can't sleep cuz' it knocks me out.

I hope you find you right mix soon, Tink, everyone is different as you can tell by the posts.

take care

SnowlOwl,

Yes indeed, tons of meds.  A lot of starts and stop as well. so I haven't listed all of them.  Also muscle relaxer, etc.

I too am up in the middle of the night.  I sleep for 3 hours tops then right back up again, online looking for night "owls" to chat with but you guys are sleep by the time I am on in the middle of the morning I should say.

You know, I mentioned to my doctor about this disease feeling like a thinking disease and he said it is.  Isn't that something?  It has the nerves to fight back.  Silly disease, doesn't it know if it destroys its host it dies too!

SnowOwl,

LOL! I should probably follow suit and stay off the computer as well..  I have restarted the prednisone so I am sure it has something to do with my being antsy but can't stay in bed.  i have to get up and move around.  I really need to invest in another chair next to my bed. the recliner I have is too low to be comfortable. that way I too could probably prop up pillows all around and rest there or watch TV.  Although, lighting candles sounds relaxing too.  I think i am going to pull out my scented candles and give them a try.

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